TikTok star Brooke Eby has died at the age of 37, following her March 2022 diagnosis with ALS, or Lou Gehrig’s disease. The ALS Network announced the news of her death on Thursday, October 1, saying the ALS community is “mourning” Eby, whom the organization described as an “extraordinary advocate, storyteller, community builder and friend.”
The Brooke Eby dead news marks the loss of one of the most prominent voices in the ALS community. Eby built a large following on TikTok by documenting her life with the disease, which affects nerve cells in the brain and spinal cord and progressively robs patients of their ability to move, speak, and eventually breathe. There is no known cure. Eby used her platform to raise awareness, share the realities of living with a terminal illness, and advocate for research funding.
Eby’s approach to her diagnosis was defined by honesty and humor. She spoke openly about the grief, the physical decline, and the absurdity of facing a terminal illness in her 30s. Her videos reached millions and helped bring visibility to a disease that affects roughly 5,000 people in the U.S. each year. She is survived by her family and her partner. Tributes poured in from followers and fellow advocates. The ALS Network said her legacy would continue through the awareness she built. She was 37.
